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Incorporating Vaccine-Preventable Disease Surveillance Into the National Health Information Network: Leveraging Children's Hospitals

^a Department of Medicine, Children's Hospital Boston, Boston, Massachusetts
^b Institute for Healthcare Improvement, Cambridge, Massachusetts
^c Children's Hospital Informatics Program at the Harvard-MIT Division of Health Sciences and Technology, Boston, Massachusetts

	ABSTRACT

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OBJECTIVE. Development of national biosurveillance systems to advance regional and national data exchange among sites of clinical care and public health authorities is a top federal priority, creating the opportunity to develop a unified national network for tracking and responding to cases of vaccine-preventable diseases. The purpose of this study was to assess the current practice and feasibility of developing a nationwide network of children's hospitals to conduct surveillance for vaccine preventable diseases.

METHODS. In 2004–2005, Web-based surveys were sent to 506 key hospital personnel from 119 pediatric hospitals, identified by the National Association of Children's Hospitals and Related Institutions. Surveys measured attitudes toward public health initiatives, willingness to join a surveillance network of children's hospitals, knowledge of mandated reporting requirements, methods of disease detection and reporting, and data sources available for surveillance.

RESULTS. A total of 395 (78%) respondents from 119 hospitals completed the survey. Surveillance at pediatric hospitals is largely passive and driven by unreimbursed efforts of infection control staff. It is vulnerable to missing cases that occur in the outpatient setting and are diagnosed clinically without laboratory confirmation or are never diagnosed by clinicians. Nearly 90% of hospital leaders are interested in participating in public health programs, and most are interested in a national network to conduct active surveillance for vaccine-preventable diseases, dependent on the provision of sufficient funding. Pediatric hospitals store records relevant to surveillance in an electronic fashion accessible to query, but <20% of these hospitals use automated methods to report cases of disease.

CONCLUSIONS. There is both the will and capability to create a robust active pediatric hospital-based reporting system for vaccine preventable diseases. This effort would dovetail well with the national priority to bolster surveillance, as well as with the goal of reducing morbidity and mortality from vaccine-preventable diseases.

Key Words: immunizations • surveillance • vaccine preventable diseases • survey • biosurveillance • public health reporting

Abbreviations: VPD—vaccine preventable disease • NACHRI—National Association of Children's Hospitals and Related Institutions • IMPACT—Immunization Monitoring Program–Active

The Department of Health and Human Services has identified biosurveillance as a top priority for establishing regional and national data exchange among hospitals and public health authorities.¹ A large-scale effort based in the pediatric hospital community could form the basis of a surveillance and response infrastructure to address the Healthy People 2010 challenge of improved monitoring to detect cases of vaccine-preventable diseases (VPDs).^2,3 There is a misconception that because childhood vaccination rates are high, the burden caused by VPDs is small, but recent outbreaks of hepatitis A,^4–6 measles,^7,8 and pertussis^9–12 have demonstrated the ongoing morbidity attributable to these VPDs.^13,14 A robust VPD surveillance system might help identify outbreaks early, improve containment efforts, identify pockets of underimmunized populations for targeted vaccination efforts, and recognize changes in serotypes or other antigens requiring vaccine modification.

Current VPD surveillance activity is composed of a patchwork of modestly connected, often duplicated, inconsistent reporting mechanisms.^15–21 Surveillance for VPDs relies mostly on voluntary, passive manual reporting by clinicians, hospitals, and laboratories to local and state public health departments, so many cases go undiagnosed or unreported.^22,23 Children suffer a disproportionate burden of morbidity attributable to VPDs,^24–26 so pediatric hospitals provide a logical source of clinical data and dedicated personnel to participate in public health surveillance and response. Although there are no universally accepted definitions of "active" or "passive" surveillance, we defined them as follows: active surveillance is the direct solicitation of data about suspected or confirmed cases of disease from those testing or treating a population at risk for the disease; passive surveillance refers to data collected from unsolicited sources.

The emerging National Health Information Network represents part of an ambitious federal agenda to advance public health through the use of widespread health information exchange.^27–31 As the structure of the network evolves, reliable reporting nodes with high-quality, detailed, and specific data will be critical to strengthen the linkage between clinical data sources and public health activity. We surveyed hospital leaders³² to assess: (1) attitudes toward public health surveillance, (2) willingness to participate in a surveillance network of children's hospitals, (3) knowledge of reporting requirements and compliance with mandatory reporting, (4) factors affecting likelihood of reporting compliance, (5) methods used to identify and report cases, and (6) availability of electronic data and automated reporting.

	METHODS

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Study Population
The National Association of Children's Hospitals and Related Institutions (NACHRI), an organization of children's hospitals that addresses public policy issues affecting the health and well-being of children and their families, identified key personnel at 119 of its US member hospitals who staff the following 6 positions: chief operating officer, chief information officer, chief of emergency medicine, infection control practitioner, infection control director, and laboratory director. We surveyed these personnel types, because we felt that they would be most knowledgeable about the topics or most influential in implementing a surveillance system requiring additional resources.

The chief operating officer survey was intended for the administrator responsible for overseeing the infection control budget. Because not every chief operating officer assumes this administrative responsibility, we asked the chief operating officer to identify the person best able to complete the survey from that perspective. The number of contacts identified by NACHRI was different for each group, because not every hospital had a designated pediatric contact for each of the 6 positions. For example, at some hospitals, there were no pediatric emergency medicine personnel.

NACHRI sent a letter explaining the study to personnel identified at the following member types of hospitals: 46 freestanding children's hospitals, 56 children's hospitals within a general hospital, and 17 hospitals classified by NACHRI as associate members (large pediatric units within medical centers). We chose not to survey NACHRI hospitals categorized as specialty hospitals (ie, burn hospitals or rehabilitation hospitals) or those listed as "supporters" (more about NACHRI is found at www.childrenshospitals.net/). Some individuals "opted out" of the study, replying that they did not wish to receive the survey; all of the others received an e-mail 1 month later, containing a hyperlink to the survey on a secure Internet Web site. A total of 506 personnel from 119 hospitals were invited to complete the survey via mail, fax, or secure Internet Web site. Completion and return of the survey constituted participant informed consent. The Children's Hospital Boston's Institutional Review Board approved the study.

Survey Design
We developed separate surveys for each of the 6 types of respondents through a process that began with a series of key informant interviews and focused discussions with national experts in biosurveillance and infectious diseases. These experts were not included in our survey sample. Survey drafts were vetted by an advisory panel of national leaders in hospital administration, informatics, emergency medicine, infection control, infectious diseases, microbiology, epidemiology, biosurveillance, vaccines, and public policy. The surveys were pilot tested in the fall of 2004 on a convenience sample of 7 hospitals not later included in the study sample. We conducted in-depth telephone or in-person debriefing interviews with pilot participants and accordingly modified and finalized the final instruments before Web-based formatting and dissemination to the study population.

Surveys were tailored to each of the 6 respondent categories. Each of the 6 survey types consisted mainly of close-ended questions with Likert-type response scales, and solicited opinions about the importance of hospital participation in public health initiatives, perceived barriers to the establishment of a national network of pediatric hospitals for VPD surveillance, knowledge of mandatory reporting requirements, and current hospital reporting practices. Chief information officers were asked about types of hospital data currently stored in electronic format accessible to query. Infection control practitioners, infection control directors, and laboratory directors were asked to make their best-educated estimate as to how likely they would be to know whether a VPD case occurred at their hospital under different clinical scenarios (based on their knowledge of the diseases and their experience in the hospitals), the communication method (ie, telephone, fax, e-mail), and the rate of reporting VPD cases to public health authorities. Laboratory directors were asked about automated reporting and point-of-care testing for VPDs performed at different sites in the hospitals.

Survey Administration
The survey was administered between November 2004 and April 2005. Nonresponders were sent a series of 3 e-mails at 2-week intervals, followed by a telephone call if they still had not either submitted a completed survey or opted out of the study. Names of participants and hospitals were known only to study personnel, and respondents were instructed that all of the identifiers would stay confidential but that we could publish or share aggregate data. Data were stored by Future Information Research Management (New York, NY), who sent updated data files weekly to the study investigators.

Data Analysis
Data were analyzed with SAS version 9.1 (SAS Institute, Cary, NC). Because most hospitals had multiple respondents, all of the analyses were conducted using PROC SURVEYFREQ or SURVEYREG,³³ using the hospital identifier to define clusters of respondents. Analysis of variance (within SURVEYREG) was used to compare mean levels of commitment across different types of reporting (Table 1). McNemar's test was used to test for differences in survey response frequencies between 2 questions using the same response scale (Table 2). The Rao-Scott modified ² test (within SURVEYFREQ) was used to compare the proportions between different groups of respondents (Table 3).

	RESULTS

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Attitudes Toward Public Health Initiatives
Both within and across hospitals, all 6 types of hospital leaders expressed strong commitment to participate in public health initiatives. On a Likert 1 to 5 scale, they felt strongly that it was important to be fully compliant with mandated reporting requirements (mean: 4.7) and slightly less strongly about the importance of participating in state (mean: 4.4) or national public health initiatives (mean: 4.1, each pairwise comparison P < .001; Table 1). Hospital leaders also expressed interest in joining an active surveillance network for VPDs (mean: 3.6). However, when asked what would be the major barrier toward potential participation in a national network of pediatric hospitals dedicated to the surveillance of VPDs, all of the personnel types identified "insufficient funding" as the principal barrier.

VPD Reporting by Pediatric Hospital Personnel
All 6 types of respondents consistently identified infection control practitioners as responsible for handling most reporting duties. Most infection control practitioners (75%) answered that they most often handle reporting to the state or local health department. Infection control practitioners and infection control directors claimed the greatest knowledge about reporting mechanisms and requirements, but <40% claimed detailed knowledge of penalties and incentives. Only 2 (1.7%) of 119 hospitals did not have a single respondent claiming "detailed knowledge" of reporting requirements. Currently, the median amount of time per week spent on reporting activities by infection control practitioners is 3.75 hours (mean: 5.2 hours; SD: 4.5 hours; interquartile range: 2–8 hours).

Across all VPDs, infection control practitioners are most likely to be aware of patients who have laboratory-confirmed disease, are inpatients, and have Neisseria meningitidis or measles (Table 2). Passive reporting works best for laboratory-confirmed disease and for hospitalized patients; cases that are clinically diagnosed but not confirmed by the laboratory are much less likely to come to the attention of infection control practitioners (P < .001), according to the best estimates of infection control practitioners. The tendency of outpatient VPD cases to go unreported exposes a major weakness of the current passive surveillance system. Once a VPD case has been identified and confirmed, the likelihood that it will be reported to public health authorities varies by disease and discipline (P < .001; see Table 3). Despite the fact that testing occurs in the laboratory, infection control practitioners are more likely than laboratory directors to report cases of VPDs that come to their attention across all of the reportable VPDs (Table 3), highlighting infection control practitioners' importance in the current reporting scheme.

There seems to be no standardized pathway, but there is significant duplication of effort, in the ways that VPD cases are reported to public health authorities, in part because local and state health departments have different requirements. Although most (86%) infection control practitioners report VPDs directly to the local health department, 44% report directly to the state health department, and only 1% report directly to the Centers for Disease Control and Prevention. Among infection control practitioners, 31% report directly to >1 government agency, suggesting an inefficiency that might be remediated through better automated reporting and communication.

The ways that laboratories handle case reporting also are highly variable. The laboratory survey revealed that only 20% of hospitals report any VPD electronically (Table 4). Overall, just 9% of chief information officers claimed current capability for fully automated reporting of laboratory results to public health agencies. Record keeping of case reports represents another area of inconsistency among these hospitals. After completing their case reports, many hospital personnel do not keep track of the cases; 26% of infection control practitioners, 41% of infection control directors, and 69% of laboratory directors stated that they do not maintain a list, file, or database of VPDs that were seen or reported. One quarter of hospitals did not have any person keeping track of VPD cases in a list, file, or database, although all 50 states have mandatory reporting requirements.

Laboratory isolation of VPDs is a critical component of case detection, but the multitude of outside laboratories performing testing for VPDs further illustrates the dispersion of relevant data. According to laboratory directors, hospital laboratories and local and state public health laboratories perform most VPD testing, although commercial laboratories handle >20% of testing for selected VPDs (Table 5). Within hospitals, the adoption of rapid point-of-care testing means that "laboratory" case identification can occur at many sites, but the results of these rapid tests are entered inconsistently into the hospital database, according to laboratory directors. Inpatient services enter the rapid test results into the hospital database 44% of the time and are more likely to do so than emergency departments (36%; P = .06) or hospital-based clinics (31%; P = .02).

	DISCUSSION

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Pediatric hospitals seem poised to address the challenge of engaging in substantive national VPD surveillance, but such activity requires a multidisciplinary commitment from hospital personnel, including infection control and laboratory leaders, as well as chief information officers, clinicians, and administrators. Children suffer a disproportionate burden of morbidity attributable to VPDs, and many children with VPDs are tested or treated at children's hospitals, so these institutions provide a logical source of rich clinical data and knowledgeable personnel to contribute to public health surveillance and response: participation best enabled through architecting the system to integrate into the evolving National Health Information Network.

Even hospitals with advanced information systems will require commitment from other diverse hospital personnel, because VPD cases present in a variety of ways and leave a signature in a variety of data and record types. The current system relies on passive surveillance, and achieving a high sensitivity of case detection will require active surveillance or direct solicitation of possible and confirmed cases of disease from a variety of data sources, including clinicians, laboratory results, clinical notes, and other hospital records.

Leaders of US pediatric hospitals support the notion of active VPD surveillance, but current compliance with reporting is highly variable. Infection control practitioners are the keystone for reporting and surveillance activities within the hospitals. Much of the reporting, however, relies on passive mechanisms and on the unreimbursed work of clinicians and other hospital personnel. Current methods would tend to miss clinically diagnosed outpatient cases or mild inpatient cases of diseases that do not require infection control intervention. Likewise, a VPD diagnosis may be missed if a child with a prolonged cough fails to be diagnosed with pertussis. An electronic biosurveillance system might catch some of these otherwise missed cases by, for example, analyzing longitudinal trends to detect repeat visits for cough with the presence of lymphocytosis.³⁴ Obstacles to reporting include recognition of reporting requirements, time constraints, turnover of personnel, and the burden of another unfunded mandate on already busy practitioners. In fact, hospital leaders identify insufficient funding as the principal barrier to joining this type of network.

Canada's Immunization Monitoring Program–Active(IMPACT) is dedicated to active VPD surveillance and may provide a blueprint for a system in the United States. IMPACT is a pediatric hospital-based national active surveillance network that tracks vaccine-associated adverse events, vaccine failures, and selected infectious diseases in children that are, or are soon to be, vaccine preventable.^35–38 In the IMPACT program, infection control nurses, in conjunction with infectious disease physicians, cull cases from admission logs, laboratory reports, and conversations with clinicians to detect VPD cases. Coordination of efforts relies on infection control efforts. IMPACT demonstrates the value of dedicated staff searching actively for VPD cases. What IMPACT lacks is an electronic infrastructure for automated or real-time electronic information exchange. An effective system might use active surveillance techniques by infection control practitioners combined with automated reporting of cases identified in the laboratory or by text processing of clinical notes.

The current federal efforts around establishing biosurveillance at US hospitals throws into greater relief the pressing need for better coordination between infection control and the laboratory. Although laboratory personnel contribute substantially to new case detection, infection control practitioners perform most reporting. This underscores an opportunity to improve reporting rates and surveillance by active solicitation of reporting from laboratory personnel, new strategies to automate delivery of laboratory-derived data to infection control practitioners, or, perhaps best, to develop automated reporting methods of VPD cases from the laboratory to infection control practitioners and directly to public health departments. The strategy of uniting laboratory and infection control efforts is reliant on commitment from hospital leadership, as well as commitment from chief information officers at the individual hospitals. With a high response rate, our survey demonstrates commitments across hospital leadership to comply with mandated reporting requirements. The buy-in from hospital leaders suggests an opportunity to leverage existing data, personnel, and infrastructure for improving VPD surveillance. Pediatric hospitals store some of the most critically necessary data in electronic form available to query, have commitment across hospital leadership, and have infection control practitioners experienced in and committed to reporting. There seems to be the will and the substrate to create an advanced pediatric hospital-based VPD reporting system.

Our finding of limited electronic and automated laboratory reporting of VPDs suggests an area ripe for improvement. Currently, there is a dearth of electronic reporting capability: >80% of hospitals do not use electronic or automated methods for reporting VPDs. Hospital leaders seeking to improve surveillance efforts and improve compliance with mandatory reporting requirements would benefit from national or regional efforts to incorporate this type of health information technology into their hospital infrastructure. The National Electronic Disease Surveillance System promotes the use of data and information system standards to advance the development of efficient, integrated, and interoperable surveillance systems, although it has not been as widely implemented as initially envisioned.^39,40 Pediatric hospitals could capitalize on the convergent public health needs and federal priorities to create a node within a national health information network that shares data informative for tracking VPDs.

Limitations
This study has some limitations inherent to survey research. By relying on self-report by hospital leaders, we may overestimate reporting rates, positive attitudes toward reporting and compliance, and types of records accessible to query, because respondents may identify the socially desirable response. Our study also has limitations that may affect generalizability. Bias may have been introduced if nonresponse to the survey was not random. By limiting the survey to 6 personnel types, we may have failed to survey a knowledgeable person with another job description. The NACHRI hospitals that we surveyed represent 42 states and the District of Columbia; 8 states were not represented. Strengths of the study include the high response rates, the diversity and range of pediatric hospitals, and the inclusion of multiple perspectives.

	CONCLUSIONS

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Pediatric hospitals leaders are well positioned to develop a network to perform active VPD surveillance. This type of network could serve as a prototype to facilitate collaborative public health efforts to monitor disease trends and mobilize resources. Willing personnel, available data elements and advances in health information technology in conjunction with the current, intense federal focus on building surveillance capacity suggest that this effort should dovetail well with National Health Information Network priorities and also address Healthy People 2010 goals by having a direct impact on disease burden from VPDs.

	ACKNOWLEDGMENTS

 
This work was supported by the Centers for Disease Control and Prevention (contract 200-2003-01601) and by National Research Service Award grant T32 HD40128-01 (Research Training in Pediatric Emergency Medicine).

We thank Dr Stavroula Osganian for her input into the study design, Joanna Brownstein for help in survey design and project coordination, Rachel Cahoon for aid in identifying state-specific reporting requirements, and Andrea Martinez for project coordination. We are also extremely grateful to Mary Gorman, Beth Hunko, and Libby Bell from the NACHRI for their invaluable contributions.

	FOOTNOTES

 
Accepted May 23, 2006.

Address correspondence to Andrew M. Fine, MD, MPH, Division of Emergency Medicine, Children's Hospital Boston, 300 Longwood Ave, Boston, MA 02115. E-mail: andrew.fine{at}childrens.harvard.edu

The authors have indicated they have no financial relationships relevant to this article to disclose.

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This Article Abstract Full Text (PDF) P3Rs: Submit a response Alert me when this article is cited Alert me when P3Rs are posted Alert me if a correction is posted Citation Map Services E-mail this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to My File Cabinet Download to citation manager Citing Articles Citing Articles via CrossRef Citing Articles via Google Scholar Google Scholar Articles by Fine, A. M. Articles by Mandl, K. D. Search for Related Content PubMed PubMed Citation Articles by Fine, A. M. Articles by Mandl, K. D. Related Collections Infectious Disease & Immunity

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